The impact of COVID‐19 on residents of long‐term care facilities with learning disabilities and/or autism

Abstract Background The COVID‐19 pandemic has had disproportionate impact on vulnerable populations including those with learning disabilities. Assessing the incidence and risk of death in such settings can improve the prevention of COVID‐19. We describe individuals who tested positive for SARS‐CoV‐2 while residing in care homes for learning disabilities and/or autism and investigate the risk of death compared with individuals living in their own homes. Methods Surveillance records for COVID‐19 infections in England from 02 February 2020 to 31 March 2022 were extracted. Data on property type, variant wave, vaccination, hospitalisation and death were derived through data linkage and enrichment. Care home residents with learning disabilities and/or autism and diagnosed with COVID‐19 were identified and analysed, and logistic regression analyses compared the risk of death of individuals living in private residence. We assessed interaction parameters by post‐estimation analyses. Results A total of 3501 individuals were identified as diagnosed with SARS‐CoV‐2 whilst living in 632 care home properties for learning disabilities and/or autism. Of the 3686 episodes of infection, 80.4% were part of an outbreak. The crude case fatality rate was 2.6% and 0.6% among care home residents with autism and/or learning disabilities and their counterparts in households, respectively. The post‐estimation analyses found over eight times the odds of death among care home residents in 60 years old compared with their counterparts living in private homes. Conclusions Care home residents with learning disabilities and/or autism have a greater risk of death from COVID‐19. Optimising guidance to meet their needs is of great importance.


| INTRODUCTION
The COVID-19 pandemic has had disproportionate impact on certain populations, such as older people and people with underlying health conditions. Residents in care homes are likely to have risk factors such as being of older age or having comorbidities, which make them vulnerable to severe COVID-19 outcomes. Additionally, these settings are high risk for COVID-19 transmission due to large household sizes and close contact with multiple carers. As such, attention has been focused on reducing the risk of transmission in the adult social care sector. However, much of the guidance has been geared towards care homes offering long-term care to older people, 1 and large national research studies in care homes often exclude residents under 65 years. 2,3 Adults and children residing in care homes specialising in learning disabilities and/or autism experience intersections of risk; some may have underlying risk factors for severe COVID-19 outcomes, while living in a care home setting where transmission of COVID-19 is more likely. Existing societal inequalities can be amplified during outbreaks and pandemics, leading to increased vulnerability to infectious diseases. Previous studies highlight how COVID-19 impacts people with learning disabilities and/or autism accessing healthcare and public health information. 4,5 The risk of serious infection and death from COVID-19 is likely to vary among people with learning disabilities, given the varied nature of these conditions and level of care required. A study conducted by Perera et al. on COVID-19 deaths among people with intellectual disabilities in the United Kingdom and Ireland concluded that there is a need to stratify guidance based on the risk of severe outcomes so that appropriate levels of shielding can be applied. 6 Previous research using population level information has also called for further explorations of the risks of COVID-19 for those with learning disabilities and/or autism living in residential care homes. 7 Elucidating the risk of serious infection and death in long-term care facility settings could therefore improve the prevention of COVID-19 outcomes for this population.
In this paper, we identify and describe individuals who tested positive for SARS-CoV-2 while residing in long-term care facilities specialised in learning disabilities and/or autism. We investigated the risk of death among individuals in these settings compared with individuals living in their own homes.

| COVID-19 cases
The UK Health Security Agency (UKHSA) is responsible for collecting data on all notifications of COVID-19 infection in England via the Second Generation Surveillance System (SGSS). 8 We extracted data for positive COVID-19 cases (polymerase chain reaction or lateral flow test) from 02 February 2020 to 31 March 2022, when free community testing was discontinued. 9 For individuals with more than one COVID-19 episode, each diagnosis occurring ≥90 days from the last episode was counted as a new episode. For each individual, data on age, sex, ethnicity, index of multiple deprivation (IMD) deciles, address and region were collected from the first episode extracted from SGSS.

| Residential setting of cases
When booking tests or reporting COVID-19 results, individuals are asked for the residential address of the person being tested. We enhanced residential addresses of all COVID-19 episodes through geospatial address matching to obtain a Unique Property Reference Number (UPRN) and a Basic Land Property Unity (BLPU) class, which indicates the property type based on local authority permitted use.
A BLPU class of RI01, a Care Quality Commission (CQC) ID indicating a care home, and/or addresses with a mention of 'care home' were used to identify individuals residing in care homes at the time of infection diagnosis. Individuals where the reinfection was not at the same property type were excluded from the analyses.
To determine which cases were living in long-term care facilities for learning disabilities and/or autism, we identified residential care settings (excluding shared living and positive lives settings) from the CQC list of providers where the sole service users were people with learning disabilities and/or autism. CQC is a statutory regulator that evaluates, inspects and regulates health and social care services in England. 10,11 Cases with an allocated CQC ID or a UPRN associated with a CQC ID were allocated as care home cases. Individuals with a BLPU from a private residential dwelling (at the time of testing) were extracted as controls.

| Hospitalisation linkage
All COVID-19 episodes were linked to the UKHSA's Hospital-Onset COVID (HOCOVID) dataset, which pulls daily feeds on hospitalised individuals with a positive SARS-CoV-2 test from the Secondary Uses Service and the Emergency Care Data Set to obtain information on hospital admissions. [12][13][14] Cases that linked to this dataset and had a positive SARS-CoV-2 test within 14 days or less before hospital admission were included in the study. The total number of hospitalisations was calculated for each individual and for each episode of COVID-19.

| Vaccination status
The data were linked to the National Immunisation Management System that UKHSA uses to record COVID-19 vaccination status for all individuals with a National Health Service (NHS) number in England. 15 Individuals that did not link to the dataset were marked as having an unknown vaccinations status. Vaccination status was calculated at the time of the onset of the earliest positive specimen date of the last episode.

| Waves of infections
To account for the variants circulating at the time of infection, the following time periods were allocated as different waves of COVID-19 variants throughout the study period and were calculated based on the earliest positive specimen date of the last episode 16

| Descriptive and statistical analyses
We first evaluated the total number of individuals who experience one or more SARS-CoV-2 infections while living in a care home for learning disabilities and or autism. Numbers of cases were observed over time, by age group and whether they were involved in an outbreak (two or more cases within 14 days of the previous case resident at the same UPRN).
Both residential care home cases and individuals in private residential dwellings who have tested positive for COVID-19 were described by age, sex, ethnicity, region, hospitalisation status and vaccination status.
To evaluate the excess risk of death, univariable and multivariable logistic regression analysis, comparing the odds of death among of those living in residential care for service users with learning disabilities and/or autism who had tested positive for COVID-19 with those with COVID-19 cases living in a private residence, was evaluated.
Age, sex, ethnicity, IMD, region, number of COVID-19 hospitalisations (for all episodes if there was a reinfection), vaccination status, month and year of the episode, variant wave and the maximum number of episodes, which could act as confounders, were considered for regression adjustment in the final multivariable model.
Three interaction parameters were assessed to identify the interaction between individuals with learning disabilities and living in a care home with the age group of COVID-19 cases, with the variant wave and with the vaccination status. We calculated adjusted odds ratios using a post-estimation analysis to estimate the odds of death among individuals with a learning disability and/or autism by age group and variant wave. We also conducted a sensitivity analysis evaluating the odds of death among unvaccinated during the period where wild type and alpha variants were dominant as there were a higher proportion of unvaccinated individuals during these periods.  (Table S1). A total of 5.0% of cases living in residential dwellings also had one or more reinfections. A total of 2113 (60.4%) cases were male, and 1378 were female. The age of cases ranged from less than 1 year old to 99 years old with the majority (77.8%) being adults between 30-69 years (Table 1); 69 cases were in children and adolescents less than 19 years old.

| Descriptive analyses
A total of 90 individuals living in care homes for autism and/or learning disabilities died compared with 92,352 living in residential dwellings leading to a crude CFR of 2.57% and 0.6%, respectively (Table S1).
Of the 3686 infections occurring in care homes for learning disabilities and/or autism, 2962 (80.4%) were part of an outbreak where two or more cases occurred at the same residential address within a 14-day period compared with 8,689,178 (53.7%) among individuals living in private dwellings (Table S2). The 2962 COVID-19 episodes in care homes for learning disabilities and/or autism were part of 770 outbreaks at 632 care homes with the same UPRN and CQC ID, with an overall median size of three cases per outbreak lasting on average 4 days between the first and final infection ( Table 2).
Most care home cases resided in a facility with 5-20 beds with 48% of cases and episodes occurring in care homes with 5-9 beds.
The proportion of episodes involved in an outbreak increased with care home bed size (Table 3)

| Risk of death
The postestimation analysis found that the odds of death were 9.7 and 8.4 times greater among individuals <40 years old and 40-59 years old living in a care home for learning disabilities and/or autism compared with those living in a private setting in the same age groups, respectively (Table 4).
Furthermore, the odds of death also varied throughout the course of the pandemic and with the variant type, where the odds of death were nearly two times greater among cases living in a care home for learning disabilities and/or autism during the alpha wave compared with those living in residential dwellings (